Current ALSFRS-R 2
Frequently asked questions
No I am 100% tube fed.
Yes, I feel full and hungry like normal. I even feel cold or hot liquids as they go in.
Yes
Not after a week or so during the healing phase. However, it can get irritated and itch.
The ALSFRS-R is an ALS disease-specific severity score reflecting motor impairment and functional deterioration. Measuring 12 aspects of physical function, ranging from one's ability to swallow and use utensils to climbing stairs and breathing. Each function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimum total score of 0.
No, I hear just fine however, people assume i cannot when i use tech to speak so the raise there voice or try sign language until i stop them.
I use APPs on my phone which allows me to write my my thoughts, then use the speaker to verbalize them.
I can only answer this for me. I do not feel any muscle pain as it relates to the muscle dying. However as the muscle dies that support joints i have pain similar to arthritis. My hands scapula and back has been very painful lately.